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Smebye et al.

BMC Health Services Research 2012, 12:241


http://www.biomedcentral.com/1472-6963/12/241

RESEARCH ARTICLE

Open Access

How do persons with dementia participate in


decision making related to health and daily care?
A multi-case study
Kari Lislerud Smebye1*, Marit Kirkevold2,3 and Knut Engedal4

Abstract
Background: Many countries have passed laws giving patients the right to participate in decisions about health
care. People with dementia cannot be assumed to be incapable of making decisions on their diagnosis alone as
they may have retained cognitive abilities.
The purpose of this study was to gain a better understanding of how persons with dementia participated in
making decisions about health care and how their family carers and professional caregivers influenced decision
making.
Methods: This Norwegian study had a qualitative multi-case design. The triad in each of the ten cases consisted of
the person with dementia, the family carer and the professional caregiver, in all 30 participants. Inclusion criteria for
the persons with dementia were: (1) 67 years or older (2) diagnosed with dementia (3) Clinical Dementia Rating
score 2, moderate dementia; (3) able to communicate verbally. The family carers and professional caregivers were
then asked to participate.
A semi-structured interview guide was used in interviews with family carers and professional caregivers. Field notes
were written after participant observation of interactions between persons with dementia and professional
caregivers during morning care or activities at a day centre. How the professional caregivers facilitated decision
making was the focus of the observations that varied in length from 30 to 90 minutes. The data were analyzed
using framework analysis combined with a hermeneutical interpretive approach.
Results: Professional caregivers based their assessment of mental competence on experience and not on
standardized tests. Persons with dementia demonstrated variability in how they participated in decision making.
Pseudo-autonomous decision making and delegating decision making were new categories that emerged.
Autonomous decision making did occur but shared decision making was the most typical pattern. Reduced mental
capacity, lack of available choices or not being given the opportunity to participate led to non-involvement. Not all
decisions were based on logic; personal values and relationships were also considered.
Conclusions: Persons with moderate dementia demonstrated variability in how they participated in decision
making. Optimal involvement was facilitated by positioning them as capable of influencing decisions, assessing
decision-specific competence, clarifying values and understanding the significance of relationships and context.

* Correspondence: kari.l.smebye@hiof.no
1
Faculty of Health and Social Work Studies, Ostfold University College, 1757
Halden, Norway
Full list of author information is available at the end of the article
2012 Smebye et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative
Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and
reproduction in any medium, provided the original work is properly cited.

Smebye et al. BMC Health Services Research 2012, 12:241


http://www.biomedcentral.com/1472-6963/12/241

Background
The Western ideal of autonomy in health matters has
led to many countries passing laws giving patients the
right to participate in deciding about their treatment
and care. Dementia is a disease that progresses over
many years, resulting in gradual decline in decision making ability. However, persons with dementia cannot be
assumed to be incapable of making decisions on the
basis of their diagnosis alone as they may have retained
abilities [1,2]. In this study, the focus was on how the
right to participate in decision making was exercised in
dementia care. This constitutes an enormous challenge
as dementia will affect an increasing number of people
in the coming years. It is estimated that currently 24.3
million people worldwide have dementia [3].
Optimizing the potential for decision making in persons with dementia contributes to the maintenance of
identity, well-being and quality of life [4-6] in addition
to promoting dignity, integrity and personhood [7-9].
Using retained cognitive abilities prevents excess disability [10-12]. Excluding persons from taking part in decisions can result in depression, frustration and anger,
exacerbating the effects of the neuropathology already in
existence, rendering the person even more debilitated
[1].
There is evidence that people with dementia in institutions as well as people living in their own homes in the
community are excluded from making decisions about
their lives [13-15]. Some do not wish to participate in
decision making [16], whilst others have the will and the
ability to participate but are not given the chance [1,17].
Competence and levels of involvement in decision
making

The progress of dementia symptoms such as memory


loss, communication problems and slowed processing
speed, reduced mental competence in persons with dementia [17-19]. The McArthur Competence Assessment
Tool for Treatment (MacCat-T) [20] is the most widely
acclaimed test developed for assessing cognitive competence [21]. This test is based on the functional abilities
of understanding relevant information, appreciating the
significance of the information for ones own situation,
reasoning by considering alternatives and finally expressing choice. These cognitive abilities are prerequisites
for making autonomous decisions and an assessment
results in concluding if a person is competent or not.
Rather than assessing a persons general competence,
it can be more feasible to determine decision-specific
competence [22]. Decisions vary in complexity according
to the nature and consequences of the decision. Decisions about daily activities are less complex than deciding about financial matters. Greater competency is
required for more complex decisions and thus influences

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how autonomous decision making can be [23]. Continuous assessment is another consideration as a person with
dementia may have intermittent competency as fluctuating episodes of lucidity do occur [24].
However, not all decisions are based on logic and deliberation; many are intuitive and based on emotions,
needs, values, preferences or habits [25,26]. Even with
significant cognitive decline, persons with dementia can
still be valuers i.e. they can, on the basis of what they
unreflectively identify with, still evaluate, interpret and
derive meaning in their lives [1,27]. The ability to value
is independent of cognition and the pertinent question is
if the person can still value and experience. Persons with
mild to moderate dementia are able to state their preferences and be involved in decision making [28,29] and to
a certain degree they are able to state their preferences
consistently [30-33].
McCormack [34] found that it was more important for
older patients to be informed and their values and preferences considered than that they made the actual decisions. Knowing the person with dementia enables others
to understand their values and individual decision making patterns [35,36].
Yet, research is inconsistent on how well family carers
preferences coincide with those of their family member
with dementia [16,37-39]. This makes it all the more important to ascertain individual values, interests and preferences of the person with dementia.
Autonomous decision making as an individual right is
increasingly being questioned [40,41] as people are
dependent on each other and decisions are negotiated to
ensure the interests of those involved [42-44]. Decisions
are made in the context of relationships and what meaning situations hold for the persons involved [22].
This study draws on the work of Thompsons model
for participating in decision making [45]. Based on individual and group interviews with adult and mentally
competent patients, Thompson studied patient involvement in situations such as consultations, treatments and
continuing care. He identified five levels of involvement: 0)
non-involvement where patients are passive recipients of
care and treatment (1) information seeking/information
receptive, considered an elementary stage of involvement and a requirement for being able to take part in
decision making (2) information dialogue incorporating
exchange of information between patient and clinicians
(3) shared decision making where patients and clinicians cooperate in finding solutions and patients experience that their opinions are considered for decision
making (4) autonomous decision making when the patient makes independent decisions. The patients ability
to be involved varied from low to high as described at
the different levels. Even though persons with dementia
were not involved in Thompsons study, his taxonomy

Smebye et al. BMC Health Services Research 2012, 12:241


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was considered appropriate as it was assumed that they


participated at different levels. Different participation
levels are followed by gradation of power in decision
making [46]. Since people with dementia are dependent
on others, this affects how power is exerted in relationships and in decision making.
The present body of knowledge is fragmented and incomplete. Few studies have specifically explored how
older people with dementia participate in decision
making [22,42]. A main reason is that autonomy, participation and decision making are theoretical and multifaceted concepts which are difficult to operationalize and
measure in practice. Thus, empirically-based research is
needed to add to existing knowledge on how persons
with dementia participate in decision making processes
in dementia care [22,23,47]. Family carers and professional caregivers also influence the decision making of
persons with dementia and combining these triadic
perspectives is recommended [48].
This study was based on actual decisions as the use of
hypothetical vignettes often used for testing decision
making abilities was not found meaningful. In dementia
research care decisions need to be studied in a real-life
context in order to understand the processes involved
and the interdependence between people with dementia,
family carers and professional caregivers [34,43].
The purpose of the study was to understand how persons with dementia participated in decision making
related to health and daily care and how their family
carers and professional caregivers influenced decision
making.

Methods
This Norwegian study had a qualitative multi-case design and was conducted in three municipalities. The
triad in each of the ten cases consisted of the person
with dementia, family carer and professional caregiver
(primary care nurse); in all 30 participants. Inclusion criteria for the persons with dementia were: (1) 67 years or
older (2) diagnosed with dementia (3) Clinical Dementia
Rating [49] score 2, i.e. moderate dementia; (3) able to
communicate verbally. Diversity was promoted through
purposive sampling. Three persons lived independently,
two persons lived with close relatives and five persons
had moved to sheltered housing or to a nursing home.
The mean age was 83 years and only two were men. The
group of family carers consisted of three spouses, two
siblings, three adult children, a daughter-in-law and a
niece. Only four family caregivers were men. The professional caregivers consisted of two registered nurses, six
enrolled nurses and two nurse aids, all women.
Twenty-six older persons were asked to participate in
the study and the main reasons for not being included

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were: no diagnosis, did not wish to participate or their


family thought it would be too stressful for them.
Three types of decisions with varying complexity and
consequences were studied: decisions concerning daily
activities, medical care and moving to sheltered housing
or a nursing home.
Data collection

A semi-structured interview guide was used in interviews


with family carers and professional caregivers. Openended questions were asked such as how they assessed
decision-making competence, what facilitated or hindered the persons decision making and their experiences
of collaboration and coordination of services. The interviews lasted approximately one hour and were audiorecorded and transcribed verbatim. Field notes were written after participant observation of interactions between
persons with dementia and professional caregivers during
morning care or activities at a day centre. How the professional caregivers facilitated decision making was the
focus of the observations that varied in length from 30 to
90 minutes. Data from the interviews and observations
were collected by one person (KLS). Supplementary data
sources were nursing and medical records and tests
(Mini-Mental-Status-Examination [50], Neuropsychiatric
Inventory [51] and Disability Assessment for Dementia
[52]. Because of the dementia trajectory, all data in each
case were collected in the course of 12 days. Data were
collected from October 2007 to January 2009 (Table 1).
Analysis

Data from interviews and observations were analyzed


using framework analysis yet allowing new categories
to emerge. This was combined with a hermeneutic
interpretive approach [53,54]. Thompsons taxonomy
of participation levels [45] was a frame of reference.
Framework analysis allowed for a priori as well as emergent codes to be used [55,56]. New emergent themes
were used to update the framework when applied to
understanding how persons with dementia participated
in decision making.
The text from the interviews and observations was read
thoroughly to identify preliminary main themes. The deductive approach with the use of Thompsons framework
[45], gave partial insight but the material revealed more
complex ways of involvement. The analysis was supplemented by adding an inductive approach. Codes were
grouped under themes with sub-headings. In each case it
was registered how family carers and professional caregivers had influenced understanding, appreciation, reasoning and expression. Each case was analyzed before
looking for common themes in all ten cases.
The analysis continued by reviewing the text, from
parts to the whole, and vice versa, until themes were

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Table 1 Sample: persons with dementia, family carers and professional caregivers
Case

MMSE

DAD

NPI severity
of symptoms

Residence

Services

Family
carer

Prof.
care-giver

Mr
A

23

74%

Agitation: 3
Anxiety: 3
Apathy: 3
Abnormal motor
behaviour: 2

Nursing home

Special dementia unit

Spouse

EN

Mrs
B

20

73%

Depression: 3

Flat - lived alone

Home nursing 3 times/day;


day centre for persons with
dementia 5 days/week

Sister

RN

Mrs
C

22

80%

Depression: 4

Sheltered housing

Home nursing 2 times/day;


general day centre 4 days/week

Daughter-in-law

EN

Mrs
D

22

85%

Agitation: 4
Depression: 3
Apathy: 3
Eating behaviour: 3

Sheltered housing

Home nursing 3 times/day;


general day centre 4 days/week;
housecleaning and laundry
1.5 hour/fortnight

Son

EN

Mrs
E

21

81%

Depression: 4
Anxiety: 4
Eating behaviour: 4

Nursing home

General ward

Son

NA

Mr
F

21

69%

Loss of conditioned
reflex: 2

Flat - lived with wife

General day centre 2 days/week

Spouse

EN

Miss
G

21

78%.

Depression: 3
Anxiety: 2

House - lived alone

Home nursing 3 times/day;


general day centre 2 days/week;
housecleaning 1 hour/week;
meals-on-wheels 3 times/week;
weekly visitor

Brother

EN

Miss
H

21

68%

Sheltered housing

Special dementia unit

Niece

NA

Mrs
I

20

71%

Delusions: 2
Eating behaviour: 3

House - lived alone

Home nursing 23 times/day;


day centre for persons with
dementia 5 days/week;
housecleaning 1,5 hours/fortnight

Daughter

EN

Mrs
J

20

80%

House - lived
with husband

Day centre for persons with


dementia 2 days/week

Spouse

RN

Abbreviations.
MMSE Minimal Mental State Examination moderately demented 2025 points, max. 30 points.
DAD Disability Assessment for Dementia measures initiative, capacity to plan and executive functioning (hygiene, dressing, continence, meals, using
telephone, managing correspondence and financial matters, household chores and leisure activities).
NPI Neuropsychiatric Inventory rates severity of psychiatric symptoms and behavioural disturbances.
Professional caregiver:
RN registered nurse.
EN enrolled nurse.
NA nurse aid.

clarified [54,57]. With this reflective, spiral process, the


categories of participation in decision making were
derived. The data were read and analyzed by the first
and second author until consensus concerning essential
themes was reached.
Ethical considerations

Staff working in nursing services, sheltered housing


and nursing homes in the three municipalities were
informed about the study and asked to identify patients
meeting inclusion criteria. Patients were asked to participate after receiving information written in everyday
language in a letter they could keep in their purse or
pocket and could be reread to compensate for deficits
in short-term memory. They were assured that nonconsent would have no impact on services provided. It

was a concern that they felt obliged to consent when


asked by a caregiver on whom they were dependent.
On the other hand, being asked by a known and
trusted person reduced anxiety [58-60]. Family carers
who helped the person with dementia on a regular
basis were asked to participate and for consent concerning participation of the person with dementia.
Consent was also sought on an ongoing basis (process
consent) as the person with dementia was asked again
on the observation day for participation consent. Beforehand, it was agreed on that if verbal or non-verbal
expressions of discomfort were registered, the person
would not be included in the study. However, this did
not occur.
The research project was approved by the Regional
Ethical Committee for Medical Research (reference

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number S-07181a) and the Norwegian Social Science


Data Services (project number 17352).
Trustworthiness

An attempt has been made to leave a decision trail so


that verification strategies such as investigator responsiveness, methodological coherence, transparency and an
analytic stance could be identified [61,62]. A framework
analysis can be viewed as prescriptive, providing a systematic and visible structure to the analysis process,
helping to maintain an audit trail and allowing flexibility
for new themes to emerge. Triangulation of data added
to the rigour of the study [56,63]. Different methods and
multiple data sources contributed to more comprehensive descriptions of the complex process of decision
making. Through participant observation non-verbal
signs and details in the environment were registered,
thus supplementing interview data.
Participation observation could influence behaviour
but concealed observation was ethically no option. Preunderstandings were scrutinized as they influence how
text develops during the interview and analysis [64,65].
Throughout the writing process, both authors discussed
this issue repeatedly. At times the first authors nursing
pre-understanding led to focusing on therapeutic intervention and not primarily as a researcher attempting to
interpret the text.

Results
There was scarce evidence in patients records of mental
competence being systematically tested even though all
had taken a Mini-Mental-Status-Examination Results
ranged from 20 to23. According to family carers, all but
one person with dementia had been informed about
their diagnosis; five persons understood what this
entailed, two persons had partial insight and three persons had no insight.
In all ten cases, no extensive registration of life history
was registered in the patient records. This limited the
professional caregivers understanding of the persons
values and what different relationships meant to their
patients.
There was considerable variability in how persons with
dementia were involved in their own decisions. Pseudoautonomous decision making and delegated decision
were new categories that emerged. Shared decision making and autonomous decision making were identified.
Persons with dementia were more autonomous in decisions about daily activities than in medical treatment or
in deciding to move to sheltered housing or a nursing
home. Shared decision making seemed to be the most
typical pattern of decision making.
Non-involvement occurred when persons because of
the trajectory of dementia were no longer capable of

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being involved, there were no choices available or they


were not given the opportunity to participate. To illustrate different categories of involvement, examples have
been selected according to three criteria: being illustrative of a particular category, offering a range of views
where there was heterogeneity and being focused and
succinct.
Autonomous decision making

There were few autonomous decisions made by the participants. These were decisions concerning daily activities important for well-being but without serious
consequences whatever decision was made. Family
carers and professional caregivers ensured that persons
were informed and checked to make sure that they
understood what the information meant in their situation. They helped clarify the range of choices by simplifying their environments in such ways as keeping things
tidy, removing irrelevant objects and keeping order by
labelling drawers. Stating possible alternatives in a clear
and concrete manner was at times necessary. Failing
memory was compensated with aids/props to make
options clearer. Narrowing the range of available choices
because of limited powers of concentration and deliberation reduced confusion and promoted autonomous decision making.
The following illustrates an assessment of competence
and autonomous decision making in choosing activities
at a day centre. The professional caregiver (PC) was
asked if Mrs J was capable of deciding in what activities
she wished to partake.
PC: If explained what, why and how - she can join in
deciding how she wants to participate - thats my
opinion. It is evident that she has a huge memory loss
so she will not remember this afterwards but there and
then she can assess the situation quite adequately.
On one occasion the PC held up the local newspaper
and announced that those wanting to join her for a
reading session could follow her to the sitting-room.
Another staff member stood by a table where baking
equipment was laid out and explained that baking
cookies was another option. Mrs J said she had
already read the paper that morning and wanted to
bake because she liked to and was familiar with
baking.
Being perceived as a person capable of making decisions influenced Mrs Js opportunities to participate. The
staff at the day centre facilitated decision making by preparing activities and communicated with her verbally
and non-verbally to make options clearer. They gave her
time to ponder the alternatives. Family members had
provided background information on each person,

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making it easier for staff to plan activities. Whilst reflecting on what activity to choose, Mrs J expressed her
values and gave rational reasons for her decision.
According to her husband, Mrs J demonstrated a different pattern of decision making at home. Their relationship was strained and her husband said that when
he made suggestions, she would often make an autonomous decision exactly the opposite of what he considered to be a wise decision. He said this often happened
when they were together with family and friends and her
behaviour embarrassed him. She felt that he ridiculed
her in public when he so often disagreed with her. Her
independent decisions seemed therefore to be a protest
against her husband and a demonstration of autonomy,
based on emotions such as anger and frustration and
not so much rational reasoning. In her home Mrs J was
negatively positioned by her husband as incapable of
making decisions in contrast to how the professional
caregivers at the day centre facilitated her participation.
Pseudo-autonomous decision making

What appeared to be autonomous decision making


could in fact be pseudo-autonomous if the prerequisites
for the decision-making process were absent. Decisions
were implicit rather than explicit. The presence or absence of dialogue was one of the discerning factors between autonomous and pseudo-autonomous decision
making. The person with dementia had in some
instances not been adequately informed and available
situational choices not openly discussed. In some cases
family carers and professional caregivers merely assumed
they knew the persons values and preferences without
sufficient clarification and decisions were based on unclear or false premises. A consequence could be that the
interests of others were prioritized instead of the interests of persons with dementia. This was illustrated in the
following example:
Mrs B was a quiet woman who trusted her family and
did not oppose them. Moving to a nursing home had
never been discussed openly with her and thus she had
not made an explicit decision about her future. It was
assumed that Mrs B wished to remain living next door
to her sister. The sister had bought this flat for Mrs B
so she could be close by to help her. Mrs B often
expressed gratitude for her sisters continuous and selfsacrificing help. The nursing services offered to help
Mrs B move to a nursing home because, according to
their assessment, she suffered from sensory deprivation
in her present situation. The sisters response to this
offer was: Im not quite ready for that yet! . . . I always
need something to do. If not, time passes by so slowly.
In this case Mrs B was not questioned directly about
her views on moving to a nursing home. It was

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assumed she wanted to remain living in her own home.


She often expressed her gratitude towards her sister for
all her help in enabling her to continue living independently. However, it could be that Mrs B never
expressed any wish of moving to a nursing home because it would imply that she did not appreciate or
was critical of her sisters efforts. This could be understood as wanting to comply with her sisters need for
someone to care for and enabling them to share each
others company. The sisters fear of boredom or loneliness could have been an underlying reason for helping
Mrs B live in her home.
The primary care nurse later arranged for respite care
in a nursing home and Mrs B thrived, evidenced by her
being more awake, enjoying the company of other residents and gaining weight. In this case, pseudoautonomous decision making entailed implicit rather
than explicit decisions.
A contrasting case is Miss G who was very clear about
what was important to her.
PC: She really wants to live in her own home. It
means everything to her!
Brother:. . . Because of everything she did for my father,
we will not pressure her. She can have it her way!
Knowing Miss G and her life history was necessary to
understand her strong desire to live in the home her
father had built and where she had cared for her ailing
father for many years. She made an autonomous decision to live in her home but needed help from others to
carry out her decision. Her brother was in a wheel-chair,
yet he helped her as much as possible by paying his sisters bills on the Internet, arranging for a neighbour to
help with the snow and mow the lawn and called her on
the days she was to attend the day centre. He supported
her wish of living independently even though there were
risks such as the possibility of fire or falling down stairs.
Knowledge of the family history helped to understand
how the norm of reciprocity influenced decisions that
were made. The community nurses worked in partnership with the family and helpers came three to four
times a day, helping her with her personal hygiene,
housecleaning and shopping, they arranged for a voluntary visitor and organized transport to the day centre.
Delegating decision making

This type of involvement was identified for major


decisions and in matters concerning daily activities.
Delegating responsibility to others emerged as a new
category based on conscious decision making by persons with dementia concerning authorizing others to
decide on their behalf. This was an active decision and
not passive acceptance of letting others decide as seen

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in non-involvement. Some delegated authority to others


on the spur of the moment; others did so after thorough deliberation but always to persons whom they
trusted. Strong family bonds and social capital, accumulated by fulfilling family norms and obligations over
the years, influenced to whom persons with dementia
delegated authority. Some were delegated responsibility
because of certain qualifications such as delegating responsibility for medical matters to a family member
who was a nurse. She accompanied her relative to the
doctor, bought medicine and monitored the effects and
side-effects of medications.
A certain insight in their own limitations was a factor
that triggered persons with dementia to delegate responsibility to others. They did not seem to completely trust
their own judgement. During morning care in a nursing
home, a resident was overheard to say to her primary
caregiver: You decide. You think clearer than I do!
Miss H deliberately delegated responsibility to a family
member. Her niece explained how she became her aunts
main family carer:
Niece: Aunt H has sort of always been a part of our
family. . . for every Christmas and for birthdays she
has always come along so we are used to that. . ...
There have been solid family bonds . . . so it has sort of
been us through all these years. . .. . . When she retired
she moved into the same housing complex where I live.
That was probably a conscious decision she made
when she retired. . .. . . Yes, by moving in there, I was
made aware of this at a quite early stage. She has
given me the responsibility and the role of family
carer. . . I have expanded it as her needs . . . increased.
In this family social capital had been built through the
years. As a seamstress Miss H had sewn clothes and
helped her niece and nephews. She had been included in
family gatherings and was considered part of the family.
When she retired she chose to move close to her niece
and before an operation she made arrangements for her
niece to manage her finances. At first, authority was
delegated to a specific domain but developed in time to
global authority. The niece took on increased responsibility when necessary, based on her sense of duty and
loyalty towards a family member who chose her as
guardian when moving in next door.

Shared decision making

Shared decision making was the most dominant pattern


demonstrating that persons with dementia were
dependent on others. They could have problems understanding information, they might not trust their own
reasoning abilities or they needed more than the allotted
time to consider options. Helpers compensated for lost

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abilities or facilitated the use of retained functions for


example by offering support or reinforcing opinions
when persons with dementia did not trust their own
judgement, were ambiguous and had a hard time deciding what to do.
It was typical that there was an exchange of information and a questioning and answering pattern in the dialogue. Helpers who were aware of how important it was
to ensure the flow of information, enquired about the
persons views, checked to make sure they understood
the information and waited for answers. Questions were
also used to remind persons of their options. In shared
decision making, support was especially needed for
reasoning.
Clarifying issues and having a shared understanding of
the situation aided collaboration within the triad. Persons with dementia were consulted and their views and
preferences influenced the decisions taken by family
carers and professional caregivers. Decision making was
a joint venture and negotiated within partnerships.
The following example shows shared decision making
concerning a daily activity. In this situation Miss G and
the professional caregiver had a common aim of making
out a list for grocery shopping:
PC: If you . . . look into the refrigerator, then I will
write. . ..
Miss G: Butter, and then I need more cheese. There
are eggs here, so I have plenty of that. Here is cream
for coffee.
PC: (looks to see if it is outdated) and says: I think
you should empty that out and then we can throw
away the carton.
Miss G: But dont you think its ok?
PC: No, I dont think its wise to use it because it may
be sour, which makes you sick in your stomach. Do you
need any bread?
Miss G: Yes, I do. That bread [that she had for
breakfast] was a little dry!
PC: You need something to drink. There is mineral
water in the refrigerator. What about a half litre of
milk?
Miss G:Yes, I need more milk.
The PC and Miss G both looked at what was in the
refrigerator a concrete and practical way for the person with dementia to see what was needed. The items
on the shopping list were negotiated between the two.
The PC explained that food would go bad if it was kept
too long and that she could become ill if she ate it.
Miss G had been thrifty all her life and questioned
throwing away food. She had to consider alternatives
and their consequences before deciding what to do.
The PC gave cues all along and made the list as Miss
G checked what was in the refrigerator and stated her

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preferences. This ensured that the shopping list was


made out on her own terms even though she was
dependent on help from the PC.
Another type of shared decision making was registered
when caregivers referred to previous negotiations and
agreements. In a specific situation, it was then not necessary to repeat these negotiations. To a certain extent
this also gave the person with dementia control if they
could recall the agreement or see written information.
An example from morning care illustrates this:
PC: It is Friday today and on Fridays we have an
agreement about showering. Look at your plan for the
week written on your board. Come let me help you!
Mrs C could decide to accept or decline the offer.
Giving and sharing information was a key issue, also a
challenging one. Professional caregivers compared
informing persons with dementia as a balancing act.
On the one hand they needed to explain matters thoroughly but on the other hand giving excessive information overwhelmed and confused the person. This was
especially challenging when new concepts and ideas
were introduced. It was difficult to comprehend that a
credit card could be used instead of cash when shopping
or that the use of plaster (Exelon) could improve
memory.
A quote from a professional caregiver illuminates this:
It is a balancing act that never ends; explaining
everything in a way that helps her to understand at
the same time. . . you can not explain yourself to death
either! Sometimes she says: Oh dear - you treat me
like a child! It is so difficult because you must treat
her like a grown-up person and at the same time
explain to her what you mean. We have used time to
explain to her that when she has taken tests. . .. then
they can say if they can try to give her dementia
medication. We have discussed the advantages of
using Exelon plaster with her.
Many were sensitive about being given too much
detailed information as this was taken to be treated in a
childish way. In this quote there is no evidence of the
person being informed of the effects or side-effects of
the medication. At times family carers and professional
caregivers selected information to reinforce own
opinions.
Non-involvement

A main reason for non-involvement was that because of


progressing dementia persons were no longer capable of
being involved in active decision making. Another major
reason was that people interacting with them did not
give them the opportunity to be involved or that there
were few or no choices available.

Page 8 of 12

This is illustrated in the following case:


Every year Mr F and his wife travelled to Southern
Europe where they especially enjoyed dancing in the
evenings. He had recently fallen, resulting in a hip fracture and his wife was very concerned that their chosen
life-style could not be continued. She said:
I give him directions and he does as he is told. . . I
force him to train . . . and remind him to eat and
drink because he forgets. I told him that if he didnt
get up and walk, he would be left sitting there in a
wheel chair. Those are his choices!
The wife appears to have been the dominating partner in their relationship, and the situation was aggravated by his mental decline and his physical disability.
She positioned him as incompetent and patronized
him, adding to his distress. The underlying problem
was that she had not accepted the situation and by
threatening him to train, she might have hoped that his
condition would return to normal and that their life
continue as before.
In another case Mr A was taken to the physician by
his wife for diagnosis. He did not understand the
information he was given. He said there was something
wrong with his wife and that she was the one who
needed her head examined. According to his
Neuropsychiatric Inventory score, he was aggressive
and restless at times.
Later, in the nursing home, he was restless and
appeared to be very upset, constantly asking for his
wife and wanting to leave the premises. He expressed
clearly that he was being kept there against his will.
He said his wife lied about why he had to be there and
she threatened to stop visiting him if he did not stop
nagging about coming home. The caregivers did not
take him seriously but teased him, asking him if he
really wanted to leave them. Since he may have feared
seeming impolite, he was not likely to say openly that
he did not want to be there.
This case illustrates the need to understand each situation in its context. Mr A did not know the reasons for
major decisions taken on his behalf. This added to his
confusion and unrest, especially being admitted to the
special care unit with locked doors.
But could there be some grounds for his suspicion?
Without consulting him, his wife sold their house,
moved to another municipality, bought a new flat,
stopped giving him his medicine, took their dog to the
vet to be put to sleep and arranged for his transfer to a
nursing home because of her own health problems. She
said that earlier on in their married life he had made all
the decisions and now it was her turn to decide and pursue her own interests. Mr As non-involvement could be

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explained by how his wife made decisions that left him


disempowered, frustrated and resigned.
The professional caregivers could perhaps have tried
to explain why his wifes illness made it necessary for
him to be there in the hope of him understanding, although partially, that there were no other alternatives,
and helping him accept and adjust to his present life.
This case is complicated by the autonomy of two persons feeling threatened. In this case the staff appeared to
allow the wife a superior stance over Mr A in decision
making, thus eroding his rights. In addition, this case
illustrated there are boundaries and limits for decision
making as it was no longer a realistic alternative for Mr
A to return home.
There were at times a glaring gap between ideals and
realities. In an interview with a primary caregiver she
said that in the nursing home residents could decide
when they wanted to get up or go to bed, what to eat or
if they wanted to participate in special activities. Observations during breakfast revealed that it was not quite
so. Residents were seated at tables with prepared food
on their plates. There was no opportunity to choose
spread and there was no offer of more food or coffee.
Mrs D was underweight but had a good appetite. She
said she had not asked for more because the staff was so
busy and did not pay her any attention. In this situation,
disinterested caregivers and understaffing prevented
caregivers facilitating decision making.

Discussion
The aim of this study was to understand how persons
with dementia participated in decision making related to
health and daily care and how family carers and professional caregivers influenced decision making processes.
Assessment of competence

Evidence of assessing the persons mental capacity was


scarce even though all had taken a Mini-Mental-StatusExamination [50]; not a completely reliable test and
therefore recommended to be used in conjunction with
other tests [66] Only in one case (Mrs J) was there an
assessment based on guidelines suggested by Grisso and
Appelbaum [20], Lai and Karlawish [67], Mitty [68] and
Walaszek [69]. When assessing mental competence,
Engedal and Kirkevold [70] claim that health workers in
Norway rely more on experience than on using standardized tests. This is a challenge in view of the fact that
decisions with high-risk consequences require greater
competence and more stringent assessment [18].
There is a growing recognition that competence is not
a question of all or nothing but is spread across a wide
continuum [71]. Competence can vary according to circumstances as well as how the person is feeling that day
and how the person is understood and treated [1,7].

Page 9 of 12

Appraisal of competence on a day-to-day basis taking


the particular decision and relationships into consideration is vital. Maybe it is not so much a question of
being either competent or incompetent but rather assessing the degree of competence along a continuum. This
allows for persons being able to make some decisions
but not others.
The focus on determining individual competence for
decision making needs to be shifted to how persons with
dementia can be empowered to participate in decision
making processes irrespective of cognitive functioning
[22]. This entails knowing the person and identifying
retained abilities, promoting understanding, appreciation, reasoning and expressing choice in addition to
being aware of what impact values and relationships
have on decision making.
Variability in how persons with dementia participate in
decision making

A major finding was that persons with moderate dementia were involved in decisions, supporting several studies
[1,29]. In earlier times, the voices of persons with dementia were not heard because unquestioned assumptions of incompetence led others to make decisions on
their behalf [72]. This resulted in a culture of therapeutic nihilism and custodial care [73]. In contrast, persons in this study demonstrated how they participated in
decision making in various ways, giving new perspectives
on how to improve dementia care.
Findings from this study expand on existing work by
describing new and different levels of involvement not
identified by Thompson [45] such as Pseudoautonomous decision making and Delegating decision
making when persons with dementia were involved in
decision making.
Pseudo-autonomous decisions were implicit rather
than explicit and often rooted in family members or
health care workers falsely assuming that they knew the
wishes of persons with dementia and acted accordingly.
As cognitive abilities decline, understanding relationships and clarifying values seem to take on added importance. In Thompsons study participants probably
relied more on their cognitive abilities. In addition
Thompson focused on the individual patients participation and not so much on relational aspects in decision
making.
By delegating responsibility to others, persons with dementia demonstrated their dependence on others. The
literature offers several reasons for delegating authority:
awareness of cognitive decline and fear of making wrong
decisions [74]; desire to live up to expectations of being
a good patient by deferring all decision making to persons with authority [75]; older people are more likely to
acquiesce and submit to authority [76]; and delegating

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as a compensatory response to optimize function in


other domains [77]. Similar reasons were identified in
these data but there was no evidence for concluding that
delegating authority was a compensatory response.
In this study the category Shared decision making
combined Thompsons three categories of Information
seeking/information receptive; Information dialogue;
and Shared decision making because it was difficult to
separate and identify these specific ways of participating
in dementia care.
More autonomous decisions were made about daily
activities than decisions about medical treatment and
moving. This was most probably because decisions
about daily care are fairly predictable and without serious consequences. In major decisions, sharing responsibility for making decisions was the main pattern. The
ideal of autonomous decision making can be unrealistic
when it comes to certain complex decisions and
obscures the basic interdependence and necessity of
shared decision making. However, autonomous decision
making cannot be ruled out all together as in the case of
Miss G who wished to remain living in her own home.
The importance of relationships and context

The study underlined the importance of understanding


decision making in a relational context. The right to participate in decision making in health care raises issues
about sharing power in patient-caregiver relationships
[78,79]. There is a real possibility of the family carers or
health professionals controlling the conversational agendas and dominating decision making. Professionals have
knowledge that puts them at an advantage when defining what is medically best for the person with dementia,
causing a power imbalance in the relationship and causing professionals to feel justified in making decisions. Information can be manipulated by withholding data or
using information to reinforce decisions already taken by
others. Exercising such power was seen in cases where
caregivers tried to convince persons with dementia to
see things their way.
Another main finding was that family bonds characterized by affection and norms of reciprocity or tensions
and power-struggles influenced decision making. With
dementia, roles and power-dynamics within a relationship changed. At times families can confuse what is in
the patients best interests with their own interests [28].
Health professionals can more actively seek the opinions of the family rather than those of the person with
dementia [15] or empathize with family members and
form alliances against the person with dementia or exclude them from making decisions [13,14]. Another possibility is that the persons wishes are overridden by the
wishes of the family in spite of support from professional
caregivers.

Page 10 of 12

In the face of such conflicts McCormack [42] suggests


applying a framework of negotiation based on the persons values. This implies that clarifying values and integrating triadic perspectives allows for different opinions
to be discussed until consensus is reached. The right to
participate in decisions needs to be adapted to the realism of interdependency in dementia care. The person
with dementia is not always the best judge of their interests and family members might have legitimate issues
needing resolution. The responsibility of health professionals is to balance needs and facilitate decision making
through optimal participation of the person with
dementia.
With the progress of dementia, persons with dementia
were satisfied with letting others take over responsibility
for them. Not being given opportunities to participate
could have adverse effects, e.g. Mr A in the nursing
home. His problems were not only due to his dementia
but also to difficult interactions with his wife and other
caregivers. Individual measures such as medicating Mr
A would thus not have been an adequate solution to his
situation. His disability was not only rooted in his brain
but also in the social world where he was constructed as
dysfunctional.
Decision making competence of persons with dementia was affected by the culture of care, the staff s behaviour and budgetary and structural constraints
registered in a study by Helgesen [80]. This was also
the case in this study. Even though the legal right to
participate in decision making was part of the explicit
ideology of the health services, these ideals were difficult to implement in practice. Health care professionals
reported of institutional objectives being prioritized
over the needs of persons needing services. Inadequate
staffing, high turnover and no continuity of care
resulted in depersonalized and task-oriented care giving. These conditions made it difficult to get to know
the person with dementia and to work in partnership
with family carers. This aligns with results in a study
by Kirkevold and Engedal [81], where it was found that
ward characteristics such as wards for persons with low
function in mental capacity, size of ward and staffing
ratio influence the quality of care.
Strengths and limitations of the study

The strength of this multi-case study is that it offered


in-depth descriptions and interpretations increasing our
understanding of nuances in decision making in dementia care. Persons with moderate dementia had a variety
of family carers with whom some had close and others
more strained relationships. They also lived in different
settings, varying from being a patient in a special unit in
a nursing home to living independently in their own
home. The small sample is a limitation so there may be

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patterns of participation that have not yet been discovered. The findings cannot be generalized to apply to all
persons with dementia but this study has identified that
these patterns of involvement in decision making do
exist.

Page 11 of 12

11.

12.
13.

Conclusions
Persons with moderate dementia demonstrated variability in how they participated in decision making. Optimal
involvement was facilitated by positioning them as capable of influencing decisions, assessing decision-specific
competence, clarifying values and understanding the significance of relationships and context.

14.
15.

16.

17.
Competing interests
The authors declare that they have no competing interests.
Authors contributions
KLS had the main responsibility for conception and design, acquisition of
data, analysis and interpretation of data in addition to drafting the
manuscript. MK contributed to the conception and design of the study,
analysis and interpretation of data and revising the article critically. KE was
involved in the analysis of data and in revising the article critically.
Acknowledgements
We wish to thank Ev Hanson-Florin for linguistic revision of the text.
However, she is not responsible for the final version of the article.

18.

19.

20.

21.
Author details
1
Faculty of Health and Social Work Studies, Ostfold University College, 1757
Halden, Norway. 2Institute for Health and Society, Faculty of Medicine,
University of Oslo, P.B. 1130, Blindern, 0318 Oslo, Norway. 3Institute of Public
Health, Aarhus University, Aarhus, Denmark. 4Norwegian Centre for Aging
and Health, Oslo University Hospital HF, Ulleval, Bygning 37, 407, Oslo,
Norway.
Received: 23 April 2012 Accepted: 2 August 2012
Published: 7 August 2012
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doi:10.1186/1472-6963-12-241
Cite this article as: Smebye et al.: How do persons with dementia
participate in decision making related to health and daily care? A multicase study. BMC Health Services Research 2012 12:241.

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